What the f**k just happened? (part 1)

Crikey, what a whirlwind.

5 days ago I was discharged after 3 weeks in hospital with an ulcerative colitis flare and other complications…writing this is genuinely going to help me process it all, indulge me.

If we take it all the way back to Jan 2023, when I started to feel ‘different’. UC was always there in the back of my mind having been diagnosed in 2009 but so thankfully having hardly any symptoms. Well behaved for almost 15 years… the fatigue, the aches I started to feel…could this be the UC starting to worsen? The docs were frankly useless and for the next 6 months things started to get ever so slightly worse, to the point in October 2023 when I fainted at home a couple of times and eventually in November took myself to A&E. My UC team (Guys & St Thomas’ shout out) wouldn’t see me in person despite knowing all symptoms and I went to Guildford A&E.

That wasn’t managed so well either and for the next 5 months I was on and off steroids (prednisolone) and in and out of A&E. One for another time but NONE of this should have happened and my UC could have been so much better managed if the right processes and care were there but medicine is not there yet…which is why we have started The Colitis Conversation and are on a mega mission!

So, since November and the first A&E visit I have been trying everything I can to get better myself. From food to sleep, to supplements, to certain movements, treatments…you name it I’ve tried it. I decided to stay off the ‘mega medicine’ I was being offered (read dirty drugs – multiple, not so nice body wide impacts) and managed to stay quite stable. We went off to Italy for the summer as we do with mild symptoms and I was managing my lifestyle and diet well…if a little controlling. Then one thing after another, we’ll never know what, I blame heat, exhaustion, dehydration and maybe some dodgy Tuscan lentil soup, I landed in bed unable to eat or drink, terrible diarrhoea and lost 8kg in 7 days. My colitis was in a major flare and my blood loss from my colon was significant.

The day I knew I was really going downhill, I couldn’t really move from bed and I could feel myself wasting away. For a whole week Zigs could only really spend time with me if he came to my bed. This was the worst feeling.

That day my heart decided to pipe up. I’ve got a heart condition; DCM. It’s no biggie and very well managed. It’s so mild docs wouldn’t know I have it if it wasn’t genetic. But my heart couldn’t cope with the strain on my body. At 11pm at night on 10th Aug I was in bed with 190bpm heart rate…it didn’t stop after a few hrs and I knew I needed to get to hospital. Off we went in the middle of the night to A&E in Siena, somewhere sadly we know quite well as Zigs was an inpatient a few years ago. Anyway – straight in and on a HR monitor. I literally lie in a corridor on my own for 4 hrs until 3am when they decide to tell me they’re moving me to the resus room in case my heart stopped.…won’t lie, I was petrified.

You won’t know that this is quite literally my worst, deepest fear coming to life. My bro, Jack was very sick with his heart and died multiple times due to heart failure. Alive and well now after a transplant! I also know that Jack’s heart was weakened by a defibrillator being used too frequently which then caused him to need a transplant. The trauma haunts me in the way I think my heart will stop at any moment, especially when I’m exercising. So a fast HR is one thing, but being told I’m going to resus to have a defib put on…..lovely.

Left alone In there for another 30 mins, in come 8 doctors and nurses ready to give me a drug that will slow my HR. I’m calm, I know I have no choice and I trust them…just about. They tell me the drug will make me feel like I’m dying and may stop my heart altogether so they will need to resus me. I said just do it quickly. They did. My heart stopped. It did feel like dying, it was horrible. I was shocked back. I remember it all.

Left alone (???) to recover, I went to sleep. My heart rate came down to 100 and I don’t remember much more. I was released the next afternoon after seeing a gastro doctor who was not at all concerned by the symptoms that had got me in that situation with my heart and didn’t want to give me any treatment. for my UC.

Ben and I knew immediately we had to get back to the UK. We literally planned to walk out of hospital (me as sick as when I went in and completely useless help) pack and drive to England.

As I walked out of A&E I fainted. My HR went to 190 and I was taken straight back to resus and given the medicine again…this time my heart didn’t stop and it worked. A few hrs later we left and started packing.

The next day Ben literally packed up our entire house and we were ready to go. Driving home was a huge risk with my heart the rate it was and almost uncontrollable bowels. To give you an idea of how scared we were, we downloaded the defib app on our phones. Ben was ready. And we drove….from Siena, Italy to Guildford, UK. Me a completely hunched up ball in the back of the car, drifting in and out of consciousness, drinking Powerade when I could for electrolytes. Ziggy next to me, quietly petrified.

Rain greeted us in the UK…and I learnt how quickly you can go downhill with UC…

17 hrs later we drove straight in to Guildford A&E and they scooped me up. For now the rest is history.

Part 2….coming up.

L x